Feeding tube advice — Scope | Disability forum
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Feeding tube advice

MushyPeaBrain Member Posts: 5
My son is now 3.5 years old and so far has been diagnosed with PVL leading to CP, sensory processing disorder, speech & language delay & disorder, dairy intolerance and failure to thrive. It's the failure to thrive that is really bothering me and I am starting to wonder if a feeding tube might be the answer.

To give you some background my son has been suffering FTT for 18 months now. He doesn't seem to have much, if any appetite. He was very difficult to wean and still prefers soft foods. When the FTT was first diagnosed he was put on high calorie milk. He started vomiting more and more and reflux was diagnosed. Reflux meds didn't work and I kept asking about dairy issues but doctors said he didn't have the right symptoms. He had an endoscopy and PH study which came back clear. He's been tested several times for gluten and all fine. Eventually after 18 months of vomiting we stopped dairy and vomiting stopped within 48 hours and didn't come back. However appetite didn't really improve much. He was put on Neocate active and this holds him roughly steady but he doesn't grow or gain weight. The dietician mentioned a feeding tube and at first we were shocked and against it. However now we can't see that there is any other option. His doctors just don't seem sure as my son is very, very active (probably due to his SPD). Now they want us to try cutting back the milk, which we have done before with no appetite increase and weight loss. The feeding specialist wont do a swallow study as she feels his swallow sounds fine and he probably wont drink the barium needed. He still has some swallowing issues but not all the time. He also has weak facial muscles but can chew if he wants to. We feel we are going round in circles.

We are also waiting for an ENT appt as he has large tonsils.

Has anyone else been here? Did the feeding tube work?


  • littlemouse
    littlemouse Member Posts: 1
    Hello, my daughter is 2.5 and had a feeding tube placed at 2 yo although it had been brought up before then. Her CP affects mostly her lower limbs, but it is queried if it is also linked to her ongoing reflux and oral motor skills. She was very orally averse (still is, really. She will take a spoonful of yogurt very very occassionally and 'melt in the mouth' finger foods sometimes) and combined with the reflux FTT. The primary reason we got the tube was because of aspirating fluids and recurrent chest issues ontop of weak lungs from being prem, but FTT as a reason wasn't far behind. We are also awaiting ENT to sort out adenoids and tonsils which may help her reflux at night, and I am hoping (though I suspect that is all I will be doing) that in turn it will influence her willingness to try food in the daytime.
    In many ways, getting a tube was the best choice I ever made for her and although I do sometimes have mixed feelings about it, I would still have gone for it every time. We got to a position, which it sounds like you are getting to now, where there seemed no way out/of getting any progression either orally or growth-related without a tube. Before you do get one though or seriously consider it, I would ask your paeds, SALT, dietician and any input like community nursing, OT etc to come up with a solid plan of how they would like the tube managed; for instance, how much they want to encourage oral skills, whether the tube is more "back up/extra calories" or becomes the primary source of getting things into him! Obviously, things change and children don't always play by the rule back but if you make sure everyone is on the same page to begin with, happy and importantly, you as parents are happy, it makes the first bit a lot easier. Also every child is different, but I found an NG made reflux horrendous and once we got a gastronomy tube things were easier to handle. It has in many ways taken the pressure off from being desperate to get calories into her and also importantly, I can for once be sure she is getting the correct dosages of meds she needs and roughly her energy requirement via formula/blended food. x
  • LilyW
    LilyW Member Posts: 18
    I akm 15 years old and have had secvgere quadriipolegic cerebral palsy since I was born bbbut when I was thre e i had cancer in my throat and I have had a gastrostomy tube since then. Often i wish that I ciould just eat normally and when i ws littkle I used to try shoving sweets into thhe hole (my parents quiickly got me a protective belt tnhat i couldn't opoen) It is NOT FUN when it is sone=meone's birthday nda thhery have cake and I don't really like siting with evvertyone at lunchtime at schhol but I don't remember muuuuch of when I was eatting and I wouldn't changeb it because it is best for me because i Don't wabnt to9 aspirate and die, so, yeah, I cope and i| reckon that tyour children will too xx
  • barneypup
    barneypup Member Posts: 17
    Lily, my daughter is now 12 and sadly can't speak.. she fed orally however for the first eleven years. After being very poorly last year with pneumonia, she had a feeding tube fitted. I want to thank you for posting your experience and feelings on the subject as it has given me an insight to the choice that an intelligent young girl would make, such as my daughter, if she could communicate her feeling as you have done so elloquently and with such intelligence.
  • LilyW
    LilyW Member Posts: 18
    As I said, II don't remmmeember much ol f eatging normamly so I guess thta I got a a much betre deal than your daughterrr; it must be hooriblke for herr :( I can'n ttalk very well because ooof my CP and beacauser I am deaf but I cnan usuaslsay get bmny message across. I wass ill twice - when i WSAdcv thrree I had throat cnandcer and when I was six i had a brain tutmour so I know what it is like to be in hosspppppppital and i relaly feel for your daughter - i cann promise you something thjough: although itn is imnevbitably hard for her, als lokng as she stays smiling, she will find herself being very stroing somewheere inside hdr and she will find herself picking herself up quickly after every stumble - do jot let anything keep her down and she wiol fgrow into a beautiful youbng lady, never letting anything get in her way. And don't diskbcouorage her from crying becccauuukse cryinrg is so amazingly therappppeutic on a bad day :)
    aND THnkyou fro your comment- it made me feel good abouyt myself as i don't often hear my name and "eloqujweently" and "such intekligence" used in sthe same sentence!


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